Getting Closer to the New Norm

Since the last time I posted, several changes in my health have taken place- many good things, some disappointing, but nothing catastrophic. 

My Heart

I have to have echo’s every 3 months to monitor the potential for a decrease in heart function due to Herceptin.  Until August, my echo’s have shown my ejection fraction at 60% to 65% (normal.  In August, my echo showed a drop to 50%, meaning that damage has occurred.  At that time, I still had 3 months until I would be completed with Herceptin treatments.  To prevent further damage, I was put on carvedilol (coreg) and lisinopril to help regulate my blood pressure, which my doctor believes is causing my EF to drop.   After only 2 weeks on the 2 new heart meds, my echo proved that my EF bounced back up to 60%.  From August to October, I had echo’s every 3 weeks.  In October, I was cleared to have an echo and Cardiologist appointments every 3 months.  The hope is that after Herceptin was completed in November, I will be able to discontinue the 2 heart medications, and the effects are not permanent.  My last echo was last week and my EF was at 65%.  Even after my actual Cardiologist appointment this week, I will know more about how long I need to stay on the 2 heart medications, but either way, they will continue to perform echo’s for a period of time to monitor the long term effects of Herceptin.  This will also assist in helping continue research on how it effects the permanent heart function.  My heart was 100% normal before being diagnosed, knowing I have a condition that makes it risky to push myself in workouts and other aspects of my life stinks.  That said, I still worked out at least 5 days a week from May through November, and lost all but 1 of my 15 lb. weight gain from chemo.  I love being active, so I pray that I can get off the 2 medications, and my heart can self-regulate itself.  And as usual, I am anxious to resume what I consider normal activity for my lifestyle.   

Herceptin/ Tykerb

An update on Herceptin.  I was only to take Herceptin for 12 calendar months, for me,  that was through November 13^th.  This is what my doctor calls the (lovely) standard of care.  At my September appointment, my doctor recommended an additional 6-12 months of Herceptin.  Any HER+ breast cancer patient will tell you- take as much Herceptin as they will give you!!!  Then, in my October appointment, she revoked the additional Herceptin and said that since my body isn’t tolerating the Herceptin/ Tykerb combo, the long term effects would be worse then the possibility for recurrence.  This was somewhat of a blessing because each time I took Herceptin, I could physically feel the effects it had on my heart for up to a week post treatment.  My heart would race, heat heavy, flutter, etc.  I knew it was hurting my heart, but taking Herceptin made me feel confident that the cancer would be gone, I have to go with my gut to not disagree with my doctor on this one.

I started Tykerb (Liptinib), in early August.  In early September I noticed some neuropathy in my arm (more on that below).  I discontinued Tykerb for a few weeks to rule out that the Tykerb was causing the neuropathy.  Since the symptoms did not decrease or go away, I started back on the Tykerb towards the end of September.  Remember, Tykerb is a chemo pill, so after taking it for a period of time, it builds up and can cause immunity issues.  In October, I had a cold/cough combo for 6 weeks, followed by Strep, followed by a GI infection.  I officially stopped Tykerb the first week of November due to it causing my body to not be able to fight off infections.  This is a picture of my last Herceptin treatment (I have a helmet of this and semi-curl/wave dark hair).

 

Neuropathy

As of early September, I started developing neuropathy in my left arm.  My doctor ordered a MRI to help determine if I have nerve damage that is causing the loss of feeling, tingling, and decreased reflexes.  Since I have expanders in, I could not get a MRI.  Apparently, there is a tiny metal piece in the back of the expander resting on my chest well.  My Plastic Surgeon said that he has called and wrote the makers of the expanders to replace the metal piece, but has had no luck to date L.  Since my left arm was the arm with axillary lymph nodes removed, and radiated, the combination is likely the cause, but until we know for sure, nothing can be done.  I did start vitamin B6, it has helped, but not enough for me to not notice it constantly.   I did see a neurologist who ordered my an EMG, which was performed in December.  The EMG is one of my favorite torture tests to date.  In this test, several flat metal disc electrodes are attached to your skin with tape or a paste. A shock-emitting electrode is placed directly over the nerve, and a recording electrode is placed over the muscles controlled by that nerve. Several quick electrical pulses are given to the nerve, and the time it takes for the muscle to contract in response to the electrical pulse is recorded. Then, they take a needle and poke you under your skin to measure the same information.  I made it through with no tears, in talking with the tech, most people do not complete the entire test at all.  Below is a picture of the device used to administer the shocks.  In short, they determined that I have carpal tunnel in my left hand.  They think that it was caused by surgery, radiation, or I have always had it, but was just asymptomatic.  Since wearing a wrist brace at night is not helping, my doctor recommended I wearing it to work during the day.  The brace is not comfortable or attractive, but I will give it a shot. 

GI Issues

I mentioned that I had a GI infection starting in November.  I was put on Flagyl, a medication for C Diff.  After 2 of 10 days on Flagly, everything was cleared up.  On day 12, the symptoms returned.  That is when I started a probiotic, and somehow, everything cleared itself up.  Since, I’ve had a series of GI infections and was finally referred to in a GI doctor.  The doctors have tossed around crohn's disease, IBS, and more.  Everything is stabilized, but the plan of action is to provide labs to check my blood for cancer markers and other indicators of issues.  Also, when I have GI issues in the future, I need to provide samples of ‘that,’ and I have to do a high fat diet for 72 hours and provide additional ‘that’ sampling for them to look over to see if my body is absorbing fat like it should.  I also have to get a colonoscopy in mid-February.  I feel like the probing never ends…. J.

Reconstruction

Since I am no longer on Herceptin, I have to get my port flushed every 6 weeks.  I have always had issues getting blood return through my port, and my last flushed proved to be consistent.  In the past, if my port does not get a blood return, the nurse administers alteplase.  Within 30 minutes, any clotting at the end of my port line has been broken down so I can get a good blood return.   At my last flush, the nurses could not get a blood return.  Since I am no longer getting treatment, they are not allowing me to have alteplase anymore.  Keep in mind, alteplase costs around $600 each flush.  That means that though they are flushing saline into my port, it isn’t truly considered a flush because there was no blood return.  The risk is that if a blood clot forms, and it is big enough and starts traveling through my body, it could kill me.  That is a highly unlikely scenario, but being diagnosed with breast cancer at age 30 is too.  That said, I want the port out, it serves no function at this point.  Since I don’t want to recover from surgery twice, I am going to have reconstruction at the time of the port removal.  I am scheduled for reconstruction on 2/3/14, and I am really excited for some perky soft boobs!  My rock solid bullet proof vest (the expanders) is somewhat uncomfortable and just does not look normal.  I met with my Plastic Surgeon this week.  Together, we decided to go with the shaped silicone implant versus the non-shaped implant because he said that there is a less chance of rippling.  However, there is potential for the implant to flip upside down.  I believe that you have to have surgery to fix the flip flop (too bad you cannot just try to manipulate it like when a baby is breech prior to birth).  For recovery, my doctor said to plan for 1 week off work/ work from home, and 6 weeks lifting no more then 10 lbs.  Since the kids are older, and Ava is no longer in a crib, I am hoping that this recovery will be easier compared to my last big surgery.  Then again, the kids always have surprises for me J.  After surgery, I will need to have a couple subsequent minor surgeries (3-4 months apart) that require fatty tissue removed from my abdomen and injected into my chest.  The stem cells from the fatty tissue will help repair the tissue and also make my upper chest area plump up for a more natural look.  After all the stem cell transfers are completed, I will be ready for nipple reconstruction.  Yes, they can make that happen too!  All this reconstruction will take several months, but in the scheme of things, I am blessed to be alive for reconstruction.  

In Final

As for my real life, I am adjusting to the new norm of not having treatments that make me uber ill for weeks, surgeries, painful radiation, but now balancing my new life with follow up doctors’ appointments, tests, and procedures associates with remission.  This is my life.  Now that I have survived (praise the Lord!), I want so badly to go back to my old body- being able to stretch in every direction with both arms, sleeping without waking up in pain, working on my computer for long periods of time without my arm tingling, holding the kids until they want down, remembering every detail of events and conversations, people’s names, etc.  I am trying to figure out what I want to do with this life, what do I really want to do?  Before I was diagnosed, I would have told you I was living the dream, now it seems like everything is up for consideration… why why why?  Sometimes I wonder if I am over thinking it.  My life changing experience has put so much into perspective, I just don’t know what to do with it. 

I had a great conversation with my oncology NP.  I was upset because when I went in for my first annual CAT scan, I was told that it would only be of the chest area.  To me, if I had positive lymph nodes removed, and if it is assumed that if it is in the lymph system, it is in the blood system, I should have a full body CAT.  She called me to help me understand that the CAT scans are really not very effective.  She reminded me that I received more extensive treatment that is included in the standard of care= extra chemo + radiation.  I had 1 of 16 positive lymph nodes, she said that she has seen patients with 16/16 positive lymph nodes without recurrence.  I cannot always focus on the medical systems preventative measures, I need to stay aware of the physical signs of recurrence- lumps, pain, sickness, etc.  She said that they have already started doing the blood marker tests to measure for elevated levels of certain measurable indicating recurrence.  I just need to reduce stress and listen, only time will tell.

In final, April used to be my favorite time of year, but I think October is starting to win me over with the beautiful weather, change of seasons, the holiday season beginning, and of course, breast cancer awareness month.  As a survivor, it feels good to have support from the community and help push information to those who are unsure of the signs of breast cancer.  Prevention is important, but acting on those early signs are critical.  Advocate for yourself, kick and scream until you get what you need.  Please please please take care of our bodies- eat right, exercise, reduce stress, LIVE your life in a healthy way… remove all risk factors in your control and set you up for success; SO if a serious medical illness does occur, your body chances of perseverance and restoration are much higher then any others who are coming into an illness with existing health challenges.  I’ve seen it first hand, patients diagnosed with cancer with heart problems, diabetes, etc.- things that can be prevented!- all those people needing treatment that their doctors cannot give them because their body cannot tolerate due to the current state of their health.  Please do not let that happen to you, don’t choose to change your lifestyle just for that reason, change it so you can live a better life now, have more energy, feel good, take less medications, whatever you want- it is accomplishable with making choices.  You can do it!